As Trust Chaplain I have for many years been part of a group co-ordinating care for patients in the final stages of life. Around ten years ago we realised it would be helpful to create a coordinated care pathway to ensure that every patient at the end of their life received consistently good care. It was while we were working on a local pathway that the Liverpool Care Pathway (LCP) was formulated and adopted nationally. We were very encouraged as the LCP encompassed everything we were trying to coordinate across our organisation.
So I was delighted to attend a recent Members’ Health Event focusing on the LCP and End of Life Care at Ashford and St. Peter’s. Unfortunately, the LCP has received a lot of negative publicity in the last few months and so it was great to have an opportunity to redress the balance.
Dr. Barry Quinn, Macmillan Consultant Lead Nurse for Cancer and Palliative Care, and Lead Nurse for End of Life Care, reminded the audience that the LCP is only one aspect of the extensive care work that exists within the hospital for people near the end of their life. He described End of Life Care as “One of the issues about which I care passionately. People who are dying are pushed to the edge of society, and yet we are all dying! There is a danger that today we leave dying to the ‘specialists’.” His own interest in this area evolved 25 years ago when as a priest he spent time with dying people in a hospice, before becoming director of pastoral care.
Barry asked the audience to air concerns about the Liverpool Care Pathway. These ranged from fears that patients on the LCP are denied food and water and kept sedated, to the belief that Trusts are financially rewarded for placing patients on the pathway. Barry reassured the audience that these and many other concerns are totally unfounded. But people also expressed their own very real anxieties: What if the doctors have got it wrong and the person isn’t dying? Once you’re on the LCP can you come off it ? (Yes you can). Why does it have such an impersonal name? (Simply because it originated from a hospice in Liverpool!)
Jane Samarasinghe, Macmillan Clinical Nurse Specialist talked in more detail about the Liverpool Care Pathway, which she defined as “a process of mutual decision-making and organisation of care focussing on the last days and hours of life.” It does not replace individual care or clinical judgement. The LCP is supported by 22 national organisations including the medical colleges and the Royal College of Nursing.
The LCP aims to ensure all dying patients receive a high standard of care in the last days and hours of their lives. If possible the patient is involved , with their Lead Clinician and one other healthcare professional, in the decision to introduce the LCP in their care. Otherwise family and carers will be involved in the discussion. The pathway aims to address not only the patient’s physical needs but their psychological, spiritual and social needs as well.
One of the key issues in end of life care is early identification. This means clinical staff can then begin to have some of the very difficult conversations with patients about how their wishes can best be met. The Trust has an End of Life Discharge Co-ordinator, whose role is to work with patients and their families to ensure that, wherever possible, people can die in the place of their choosing. Palliative Care nurses are now available six days per week, soon to be every day. However we also believe that every member of staff has a part to play in the care of the dying and their loved ones.
It has saddened me that what was originally designed simply as a tool to achieve the very best possible care of the dying has become so maligned. This event reinforced my belief that the pathway helps us focus on all the very best aspects of care for our dying patients and their families.
By Judith Allford, Ashford and St. Peter’s Chaplain